NEW COMER - Oral Cancer Support - Survivor / Patient Forum

HELLO. MY NAME IS PETER AKA PETEYB. I NEVER HAVE USED THIS SYSTEM.I'M COMPUTOR LITERATE BUT NEVER HAVE BEEN IN A CHAT ROOM OR WHATEVER THIS IS.
I HAVE A TONGUE TUMOR AND LOTS OF QUESTIONS. CAN SOMEONE WALK ME THRU THIS,PLEASE???

HELLO. TRYING TO FIGURE THIS OUT.

Welome to the club no one wants to belong to. It is a great place to get answers and support i can tell ya that ! I too had tongue cancer and I am a month out of surgery ! We can answer some questions as far what to expect from treatments but 1st they will ask you give more info ..like what stage and what are your treatment plans. have you had a biopsy ? with some of that info we can give you more info.

Welcome, PeteyB. I'm sorry that you have this problem, but you will find help, information, support, and comfort here. Fire away!

Hi, PeteyB, you are in a safe place here. #1. Please turn off your "caps" unless you need to yell about something. #2. Please give us as much info as possible about you so we can talk to intelligently. #3. You will find alot of very helpful and very experienced folks here, so stay with us. Everyone on these boards is either an Oral cancer patient or a caregiver and we will care about you. Amy in the Ozarks

Hi Petey - So very glad you found this site! I'm a caregiver to my son who also had cancer on his tongue and he is doing really well, now. There are a lot of wonderful people here that can help you with any questions you have. Did you just find out about your tumor or have you had a biopsy or surgery? Tell us more about you and about any questions you might have.

Here goes! I had a sore on the left side of my tongue (frnt 2/3 ).
Since I just got dentures, I went to my dentist. He adjusted them and I asked him if it looked like cancer, as my old dentist (when I had My teeth) would always do a "cancer check". He said to gargle with salt water and we'd check it in 2 wks at my next appt. Well, they moved my appt. up 2 more wks.When i did go, he looked at it and told me to go to an oral surgeon and get a biopsy.
I went to my DR. who used to be a surgeon for 30 years but just office calls know. He seemed highly concerned and took a biopsy. It came back negative.
He was so releived as he thought different, and my dentist was concerned to. I went back to the dentist and he adjusted my dentures and smoothed all surfaces.
he told me to gargle salt water. I did and it seemed to go away. It never was painful, I just saw it. About 7 mos. later It started to hurt. I tried salt water, and kept my teeth out whenever possible. It would not go away.
I went to my doctor and he really was upset. He did not do another biopsay, he sent me to a head & neck DR.
He examined the tumor on the left underside of the tongue. Also, the swollen lymph node under my chin about the size of a quater. The tumor is about 3/4" wide by about 2" long.
He said I had cancer and did not do a biopsy and sent me to another Dr. I am schedualed for4/6/07, but will be notified of 1st cancellation.
From reading on the internet and this site too, I have "QUEST MY OWN STAGE" T3N1MX. I WILL BE CONSULTED WITH THIS NEXT DR. I know this is only a guess, but I know it is ADVANCED.
Please advise.
And Thank You for your warm welcome the we all hate... Sincerely, Petey

Petey - It sure sounds to me like you've waited long enough! My son waited too long even after it started hurting him really bad. When he finally went to the dentist, his dentist sent him right away to get a biopsy and when the doctor that did the biopsy made a phone call to the surgeon for a week later, my ex-daughter-in-law called the surgeon on a friday, (I was too stressed out to call) she got the appointment for the following Monday. Sometimes it is who yells the loudest that gets the quickest service. Your health is important. Maybe if someone else called for you and impressed on the doctor or the office people how urgent it is, they would be able to squeeze you in earlier or rearange their schedule. Sounds like you did some good research to find out the information you did. Keep in touch and let us know what happens.

Petey, I hope you get an appointment sooner than April 6. I notice in another post that you mention that you are getting a biopsy. I am so glad. When will that be? How did you get it arranged?

You Won't beleive this one. They called me up to say they could see me yesterday, as they said I would get the first cancellation. I explained that I had no money and could pay them in 2 weeks, would that be a problem.( consult =225.00)She said don't go anywhere, she would call right back. Well, she never called. I called about 3pm today and ask why no one called, and was told I spoke with someone else, but I could come in the morning. I said fine, but I still don'[t have any money for 2 weeks.
She told me she would have to talk to the office manager.... I said great,is she there now...no,I'll have her call you...ok..can I come at 9:30 then?...we'll call back..this is where we were yesterday and no one called back...well do you want the appt?...sure but I have no money. OH< Ihave the manager call. I said lady, do you hear or understand whats happening here???Do you know my life is riding on this simple procedure???
Then I asked, How much if I forgo the consult, and just get a biopsy?? Oh, we can do that, you must get a concut 1st...does it include thye biopsy I asked..no...well how bout just a biopsy..we can just give you a biopsy,...whynot?? I was sent to A specialist by my DR> He saw me in 2 hrs. said I had cancer, and sent me here, and beside I TOLD HER. How can he consult and plan my treatment, if he doesnt no if its benign or malignat??? Oh, he can't just do a biopsy. ROUND AND ROUND WE WENT. AFTER REPEATING MYSELF 3 MORE X ISAID, YOU KNOW WHAT LADY. I'M JUST GONNA DIE AND HUNG UP. NOW,HERES THE KICKER, THEY CALL BACK AND ASKED IF i WANTED THE9:30 STIL. i SAID YES, BUT i CAN'T PAY FOR 2 WKS,WELL I'LL HAVE TO CHECK.

CONTINUED:
So now I call the first DR my dr sent me to, the one that said I had cancer,and asked if I could get a biopsy there. They said that why we sent you to the other Dr cause he is the surgeon, I said yes,but you can do a biopsy,and dr already said I had cancer, plus I sign a form yesterday that I would be responsable for any lab work, including biopsy's.Well you have to see the other dr. So my appt is 4-6-07, BUT i'M NOT GOING!

CONTINUED:
I'm going to find somewhere else to go.
i must get my biopsy, PeteyB

Is there no one, social worker type, you can go to?

Surely there is a clinic at the U. of Miami Medical Center for un-insured patients. Are you on Medicaid at the moment? Can you get on it? Call the Medicaid office and find out. You simply can not be refused treatment because of your financial status. I don't know the answers, but I know that there must be one. If not, then this country is on the wrong track!!

THE lORD WORKS IN MYSTERIOUS WAYS. I was on my way to social services and my family DR called, He has me schedualed for a FREE biopsy, Monday 9:30.
I just broke the news to my inlaws, and they are going to help me.
During that conversation I got a phone call from a job I put a "BID" on 1 month ago. I'm heading there now, as I had to come home to get my paperwork.
No matter how hard it gets, never stop beleiving.
This life is but a pitstop on the way to a divine kingdom.
PeteyB

PeteyB - Oh I am just so-o-o-o-o happy for you! And I am so proud of how courageous you are and determined to fight! That is super wonderful news! Keep us informed and let us know what happens. And I am going to keep believing that everything will go well with the job bid, too!

To PeteyB - KICK ASS- you keep going! [and apologies to anyone who might be offended by this Southern Ozarks expression] Amy in the Oz

Petey! What wonderful news. You're right....the Lord DOES work in mysterious ways....and you know something??? Through YOU, many of us today have been blessed--by your strength and the miracle that is happening in your life. Never give up. Life never turns out the way we imagined it, but we are not the ones in charge.

Petey

That is great news !!!!!! Somtimes you have to be pushy , cuz you are right it is YOUR LIFE !!! YOU Go and fight for what you belive in !!! keep us posted